Going Home to Rot on the Couch!!

Usually diagnosis goes like this:

Patient feels something wrong (something hurts, or looks wrong, or won’t work etc) … so they go the their GP. Doctor examines, asks questions, and does one or more of the following:

A: Makes a clear diagnosis, followed by prescribing some for of treatment, (which may or may not include home remedies, rest, medications, splints, creams etc)

B: Doesn’t know what the cause is so makes a recommendation to see someone who DOES know what is going on … usually some kind of specialist in the field that he or she suspects the problem lies, and sends the patient on (and may or may not include some advice on how to survive in the mean time) …

Sadly however, many doctors, including specialists, have either never heard of EDS, or worse, if they have they know very little. And a little bit of knowledge can be worse than no knowledge at all!! But a little bit of research (sooo easy in this day and age of the internet!!), and a little bit of empathy, can go a VERY long way!

Yesterday I made an appointment to see my GP and I was shocked at how petrified I was of seeing her! It isn’t even two weeks since my diagnosis, but I have lived with the symptoms of my condition my entire life, and I am SOOOO exhausted from dealing with the unknown, and not getting the care that I need! After 8 months in agony from this very minor fall alone, and 3 months in a moon boot and the rest of my limbs folding under the weight of having to take up the slack in my foot (literally!!!) I took myself off to a Rheumatologist (a Rheumatologist because I suspected that there is something wrong with my tendons and ligaments). A fabulous nursing practitioner in ER also suggested that a Rheumatologist would be a good option, and so I grabbed that lead and went for it! It “only” took two months to get in with me being available when she had a cancellation, and I was surprised yet not surprised at the diagnosis, (surprised to get something concrete for only the second time in my life!!! But at the same time not surprised that it was something wrong with my connective tissues, because for the first time in my life my VERY THICK medical file made sense!). But at that point I knew almost nothing about EDS. So I asked her what happens next and when does she need to see me again, and she brushed me off and said I don’t need to come back, as there is nothing that can be done!

My GP said I am being a little melodramatic saying that she (the Rheumatologist) sent me home to rot on the couch, but really, I had NO information, I couldn’t walk without crutches and the crutches that I had were absolutely abominable to say the least! …. I had no plan, no idea what I was going to do next, and if I had taken her advice that there was nothing to be done and I can’t get around on my own, then what else would I have done but gone home and rotted away on the couch!!

Instead I went straight home and started my own research, and within 24 hours I had decent crutches, joined an on-line EDS community group, had a gazillion questions answered by an AMAZINGLY wonderful bunch of people who are walking this path before me and behind me, and it has REALLY made me wonder how many doctors who know anything about EDS have this much knowledge? EDS is supposed to be rare, but I have now heard it said over and over that it is actually not so much rare, as rarely diagnosed. So I broke down my body into a simple list and what and who needed to happen for each one to be addressed, to make the most of what I still have and prepare for what is to come, but I can’t do it all on my own. Yes I can research and find a decent pair of crutches, but I don’t have a medical degree, and I can’t write my own scripts. I realised that what I need is a primary care doctor who can help me with the overall picture, someone who can tweak my list and add to it, send me in better directions that I would ever have thought of, and support me in the areas that I have come up with myself…

I have lived with such pain for all of my adult life, that I had already set up some basic survival tools, without even knowing why. My biggest tool is my hot baths each night before I go to bed. Because I had NO idea what I was actually living with, I felt as though my hip pain was in my bones. I felt that because the pain was so deep, and a heavy kind of pain that I suspect people with arthritis in their hips feel. A HOT soaking bath would ease the pain most nights in order to get enough sleep. Most morning I would still wake up with my hip at the very least in pain, but at least I had mostly slept through the night! I also feel the cold terribly and worked out by the time I was thirty that my body does not regulate its own temperature very well. So a hot bath that warmed me to the core was always vital for my sleep, which seems crazy because even in the heat of summer I needed this for pain management, but then would need the fan on so that I don’t over heat in the night in summer!!

So I already have many very effective strategies in place which are very helpful, but I knew very little medically about my pain, why I have it and what can be done about it, and knowledge of these things makes control over them WAAAY more successful! I had already taken up swimming two weeks prior to diagnosis, to get my muscles back from wasting away in a moon boot for over three months, (and when I mean swimming, think doggy paddle and treading water, nothing more!!) but in those two weeks because I didn’t know that my joints were overextending, in that VERY basic and short swimming time, I had already subluxated both a knee and the other hip!! But knowing everything that I know now (and am learning every day), I changed that exercise to even further reducing strain, and I haven’t popped anything in the 2 weeks since!!!

In my EDS community group, the thing that scared me the most, was reading about the general lack of empathy and willingness to learn by so many health professionals. From nurses to GPs to specialists. Many health specialists don’t like to think that they are wrong, or that they don’t know enough, and in my long and complicated experience, the VERY best who have cared for me, are those who admit that they simply don’t know, and we find out together … or they find out for me, … or they send me to someone who might know! NO ONE has ever even suspected EDS and when I look back it makes me feel a little angry, as often it was staring us all in the face, but doctors are trained to think horses when they hear hooves, and to give some of them credit, there are some truly AMAZING and helpful health care professionals out there, and I have had the pleasure of working with some of them, and I am SOOOO thankful for them, but not one of them checked for EDS…

But the attitude of my Rheumatologist, the first person to know what is going on, the one “knows the most”, floored me! She clearly thinks that it is either nothing to worry about, or if it is then there is nothing to be done anyway! And THAT is simply not OK!! Below is a tiny sample of some of the examples of mistreatment that people in the EDS community have experiences first hand (and given me permission to share, as the group is not public for a reason) … and when you read them I am sure that you will understand my trepidation at meeting with my GP and asking her to come on board with me and do all that we can to keep me mobile, active, and as pain free as possible. I’m not stupid, I know that this can’t be fixed, and that I will likely never be pain free, but SURELY, in the same way that my hot baths can keep me from needing pain meds most nights, there must be other things that we can do to support this weary old bod!?!? Thankfully my prayers were answered and she was FABULOUS! She is not an expert by a long shot but soon she will be let me tell you!! After my whole life of having sooo much bad medical help, and now meeting a whole community who is by and large struggling to find a voice and get support, there was good reason to be fearful!!

Here are what just a small sample of my EDS community have shared of their experiences:

Cardiologist at highly respected vascular institute: “I don’t really know anything about EDS. A colleague once told me to look for thin transparent skin and prominent veins. I can’t even tell if you have thin skin. Do you feel like you do?”

 
“Well, you don’t LOOK sick ! You look healthier than most. You are too young to have all these issues !”
 “You certainly have alot of medical issues…so what brings you in for TODAYS visit ?!?!
 

From a geneticist: You can’t have EDS you’re not Jewish!

Neurologist from UCLA. “It’s not supposed to hurt”. Or “You don’t need help with your EDS you need help for your Borderline Personality Disorder!!”

From an orthopedist – “Your body does some weird shit!”

Also years ago in my GPs office from the nurse who had to take my blood – “I saw your name on the schedule today – couldn’t you have come next week when I’m on vacation?!”

New rheumatologist, fired after one visit: “I don’t know why you’re pushing for this diagnosis. There’s no magic pill” (I wasn’t there for diagnosis. I already have diagnosis and need help with pain.) Followed by: “Vitamin C will solve all of that.” HOMIE, YOU JUST SAID THERE’S NO MAGIC PILL!!!

Here’s another gem from that rheumy: “Your scoliosis isn’t severe enough to earn you a diagnosis of EDS. EDS people have really severe scoliosis and heart problems. You don’t have a murmur or aorta problems, so it can’t be EDS.” (Keep in mind my scoliosis is degenerative in nature. It wasn’t there 10 years ago when I was 20. 30 year old people do not just randomly come up with degenerative scoliosis!!)

You should run 3 to 5 miles everyday.

“There is no such thing as low blood pressure! If there was, human life would cease to exist” my ex doctor told me this and her husband is a cardiologist!

Dr: “You, Ms X, are obese! .. Lose some weight and your health issues will diminish.”…in reality, I ended up needing an aortic valve replacement. I was holding water retention , because I was in heart failure. OBESE …
 
I had an orthopedist, who had been treating me for years, tell me a year post dx that if I had EDS that I would have exhibited symptoms way before 43. The broken hip at 12, neck at 16, almost every joint on L side of body etc etc, dislocations since childhood, MCAD, nor dyautonomia count as symptoms.
 
I got told there was no way my hip had dislocated if I hadn’t been in some kind of accident. My ankle sublaxed while I was in hospital, a day after knee op when I hadn’t been able to get out of bed! (just from the weight of the sheets and blanket). They told me I had obviously tried to walk when I’d been told not to, and twisted my ankle!!!!
 
I reminded an OB/GYN of a Chevy truck. While on bed rest with my 4th!!!
 
My knee dislocates from pushing on the pedal while driving. “Well what if you just kept driving?” Then hands me a an article about how Hypermobility benefits musicians.
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4 thoughts on “Going Home to Rot on the Couch!!

  1. Here’s one for your list, I got this response a lot from ER docs and orthos after I spontaneously dislocated my proximal tibia and fibula (long bones at bottom of knee joint) when trying to get up off the floor at the end of yoga class: “you couldn’t have had that subluxation spontaneously, that only happens to football or soccer players when they’re kicked or tackled from the side. It must have just been your patella, I’ve heard of patellar subluxation happening a lot with EDS”. There were soooooo many problems with this picture:
    1. I’m a medical provider so I know my anatomy. It wasn’t my patella.
    2. My yoga teacher also happened to be a physical therapist, and was very familiar with my hypermobility, and her immediate response after I screamed was “holy s#%t, you just dislocated your tibia and fibula!” And she then grabbed my lower leg, pulled hard, and reduced the dislocation for me. (I think there was another scream in there somewhere. I’m not embarrassed, it really hurt!) Point being, a real live PT witnessed the incident and manually reduced the dislocation of my TIBIA and FIBULA, not my patella.
    3. As previously stated, I have EDS so my joints don’t follow the rules, and bizarre complex sports injuries can happen to us when we just sneeze or cough or wash our hair. Or get up from the floor the wrong way when our leg muscles are exhausted from a challenging yoga class.
    And then there was the ripple effect of my employers and short term injury insurance not understanding why my “patellar subluxation” (as it was charted by all those ER docs and orthos) took more than the usual 3 weeks to heal. Duh! It took forever to get my chart amended with the accurate diagnosis.

    So that’s my story from a patient perspective. Actually lets all be thankful for that knee injury because it took me out of my old specialty completely because it took YEARS to gain strength and stability in that leg (3 weeks my ass!) It forced me to find a new way to work, open my own part time practice where I could set my own hours, and eventually focus on pain management. As a chronic pain provider who sees a LOT of hypermobile patients now, I have to admit I agree with the ignorant ortho listed in your post who mentioned that EDS joints “do weird shit” – they really do! But there’s a sympathetic way to express that to patients and it sounds like his comment was less than sympathetic and wasn’t appropriate at the time. Most of my patients would probably think it was hilarious if I said that to them, but I have a pretty relaxed bedside manner, and I would hope I wouldn’t say something like that to a patient I didn’t know very well, because I would hate to offend someone 🙂

    I agree completely that the situation is pretty grim out there for EDSers and anyone else with chronic pain. I hope that as the diagnosis becomes more well known that more providers will educate themselves, and more patients will be educating themselves via the Internet as you have done. So everyone please forward articles like this to your friends and family to get the word out… You never know who may end up going into the medical field and will remember all of our stories, or who already is but it never really dawned on them how serious and painful EDS and fibro and all these illnesses are, and we will hopefully end up with a new generation of kind and sympathetic and well-educated providers out there!

    Bendy hugs to all,
    Medea Karr FNP, and her superhero sidekick FibroDog

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    1. Thanks so much Medea,

      Sadly I am hearing these stories over and over but I am also encouraged by people like yourselves, my GP, and a bunch of other health professionals who are really getting one board! As you say, the more word gets out there the more people will understand it! I did have the “fun” (no one will get this but us LOL) situation this morning where a really lovely girl I know who is a newly trained OT has been been really great about asking me about my journey (before EDS Dx and after Lisfranc Dx) and I hadn’t seen her in a while. This morning she saw me and asked how things were going and my gut was that she is clued up enough for me to tell her that I have Ehlers-Danlos and see if she has heard of it, and if not then that was ok, but she had and it was a bit of a buzz having someone respond so positively instead of me having to explain ANYTHING haha, … not that it is ANYONE’s fault that they haven’t, but I was just super glad that I had taken the chance and used the real name instead of dumbing it down first 🙂

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  2. Oh my goodness. Just read this post and I am speechless… Thank God there are a few compassionate and proactive doctors out there! The ME/CFS community shares similar stories of lack of understanding, knowledge and empathy. What a struggle it must be, and you had every reason to feel trepidatious before seeing your new GP!!!

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